The word that might best describe Penny Shaw is “indefatigable.” A long-time activist for persons with disabilities, Shaw is a visible and vocal presence on national, state and community issues. She is known for her sharp opinions and blunt talk as an advocate. Shaw sits on more than a dozen committees, including an advisory panel to the state Executive Office of Elder Affairs. She is a prolific writer on disability issues whose work has appeared in a wide range of journals and other publications.
Shaw has also been a nursing home resident for nearly 16 years. A teacher with a PhD in French literature, she became disabled in 2001 with Guillain-Barre Syndrome, a rare neuromuscular condition, and was not expected to live. After a year in a rehab hospital, Shaw was transferred to a nursing facility in Braintree, Mass., specializing in neurorehabilitation care, where she now lives. Gerontology Institute Director Len Fishman recently met with Shaw to talk about nursing homes from a resident’s perspective. The following is an edited transcript of their conversation.
LEN FISHMAN: You’ve been living in a nursing home for many years now. What was it like at the very beginning?
PENNY SHAW: First of all, I was intubated for five years with a feeding tube. I arrived [at what is now called Braintree Manor Healthcare] on December the 26, 2002, but I was not decannulated until August 2006. So I was basically bed-bound.
LF: So when you came into the nursing home there were already tremendous restraints on your life?
PS: Yes because I’m a total care person. I can’t do anything.
LF: But even more so, I’m sure, when you first came into the nursing home.
PS: Sure. That’s why I have the best room in my unit, because I had a [tracheostomy] in there.
LF: Are you the only occupant?
PS: No, it’s a double room. I’ve had about 30 roommates and a number of them have died with me. There’s a lot of stuff that goes on in those walls. I’ve gone to many, many funerals over many years.
LF: What were some of the accommodations you had to make as you adjusted to life there?
PS: I don’t remember making any accommodations. I think I just lived the life I lived there and as things went along and I decided I wanted to do something differently there was just a series of incremental changes I made. I don’t remember any particular adaptation.
LF: How did you end up getting the power chair?
PS: I didn’t get a power chair until 2010. I was nine and half years inside of buildings and they didn’t even think to get me a power chair. I was going outpatient for some medical care and someone said to me “Why don’t you have a power chair?” and I said “Oh, what a good idea.” So I went back to my building and I asked for one. I was going around being pushed by a manual wheelchair. It was crazy. This is where you have to think for yourself. They [nursing homes] are good places, but they’re not progressive.
LF: What was the “before and after” of getting a power chair like?
PS: It was transformative. I went out. As soon I was in the community it just changed my life completely. Assistive technology is what allows us to function in ways that we can’t function on our own. They’re very regressive, these nursing homes, on assistive technology. It’s something they have to move ahead on.
LF: It sounds like the public advocacy that you’re doing now has been enabled, to a large extent, by the power chair.
PS: I couldn’t do it without it. I did some before, but I was writing letters. That’s how I got started.
LF: Can you describe what your daily routine is like?
PS: I get up before breakfast seven days a week, 365 days a year. I check my computer first, always. I’m washed, I’m dressed, I’m transferred. I’m a lift transfer, a two-person assist.
LF: And your day?
PS: I’m usually out of my room before 8 a.m. I go down to the computer room, it’s just around the corner. I always do my computer work first. If it’s a weekend, then I can get big chunks of work done. Then I go downstairs to another computer where there’s a printer. And then, depending on what I’m doing, I go out. I schedule all my own appointments — medical, dental, transportation. I eat at 1 o’clock or so, or I’ll take my lunch if I’m going out.
LF: So the nursing home facilitates your flexibility?
PS: They have no choice. It’s federal law. Some nurses accuse me of being spoiled. I just know the law and it’s very clear. I have the right to choose my own schedules. Everything is my choice. I know my rights.
LF: How does your nursing home view your advocacy work?
PS: They’ve always supported my advocacy. My picture is framed on the front page of the [Boston] Globe downstairs. They’re proud to have an advocate. These are good people.
LF: When you’re talking to people who are in the nursing home advocacy field, most of them are coming out of their own experience with parents or grandparents. They are essentially advocating on behalf of people who are old and frail…
PS: And cannot speak for themselves, yes.
LF: And often cognitively impaired. Is it frustrating for you to be included in that group?
PS: Well, it doesn’t really affect me or other people so much as when we get ignored. Nothing bad happens to us. It’s just that our needs are not a priority.
LF: So let’s go to the question I should’ve asked earlier. Why aren’t you living in the community?
PS: There’s many reasons. One is safety. The Hoyer [patient] lifts can break. Do you know what’s it like to be up in a Hoyer lift when it fails? Luckily, I can tell the CNAs [certified nurse assistants] what to do but it’s scary. Another thing is that I’m a little hard to put back in my chair. I don’t know if one person could do it. I don’t need 24-hour care, but I need access to 24-hour care. Also, because my legs have no muscle tone, I have to lay down for a shower and need a reclining shower chair. I looked and I couldn’t find one accessible apartment anywhere where the bathroom was big enough to have a reclining shower chair. It’s an architectural barrier. There are a bunch of reasons I can’t live in the community, not just predictability.
LF: So there are people with your level of care need living in the community?
PS: I would think so because I have friends who can’t feed themselves who live in the community.
LF: It sounds like you’re saying that this [nursing home] environment is actually less restrictive for you than a community environment might be.
PS: I have a more predictable schedule. My life is predictable in my building.
LF: What were you giving up by deciding to live in a nursing home that was important to you?
PS: My biggest problem is that nursing assistants are not trained in what we call person-centered care. You don’t know me. My routine is different. They’re task-oriented, not taught to ask questions and be curious. When I try to explain how I do something, they could care less sometimes. That would not happen in the community, where all [personal care assistants] know that the client hires them, the client trains them, and if the client doesn’t like them, they fire them. It’s clear from the beginning that they’re an employee of the person in the community. That is the biggest thing that I lose – the perception of what the job entails and what their relationship is.
LF: So everyday life in a nursing home is a balance of those pros and cons.
PS: The nursing home provides predictability, quality care, working equipment. It saves you a lot of time. I don’t have to shop or cook or clean. My medications are delivered. So there are a lot of positives. The negatives are ongoing. I’ve had five roommates die with me in my room. One I was looking in the face when she passed. Some of the staff every once in a while get a little paternalizing. The problem with the CNAs thinking I’m insulting them when I’m not — not all of them behave like that but some do. Managing my own care has made things work.